Alter Everything

The Toe In The Day: Mark Nepo's Take On Pain & Chronic Illness

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Imagine, you're outside walking down the sidewalk. 
The sun is shining. 
The birds are singing. 
The air is fresh. 
And YOU are completely aware life is a gift and a miracle to be treasured.

Then, suddenly, without warning, you stub your toe
...not a small stub either. 
A BIG stub...
like your toe is broken.

You no longer appreciate the sun
or the breeze
or the beauty.
You know they're there,
but the toe gets all of your attention (as it should).
But, for how long?
That's the question.

That is my summation of how Mark Nepo describes life with chronic pain/illness.  As a cancer survivor, Mark reflects on his journey in The Book of Awakening which was recently featured on Oprah's Super Soul Sunday. He also recently suffered from a mysterious stomach illness that had him reeling in agony from even the smallest bite of food.
 
According to Mark:

Each of us are ancient flutes made out bones.
Our holes, hollowed out by pain, create beautiful music.
Still, being hollowed out is never fun in the process.

"Were you afraid to die?" asked Oprah.
"I was afraid to live." replied Mark.
 
Fear is all consuming with chronic illness...he reminds.

We're afraid of the past...going back to the hospital, being bedridden again, re-visiting old symptoms.
We're afraid of the present...having an "attack," not being able to handle an "attack," being misunderstood, being judged, doing too much, not doing enough.
We're afraid of the future...What's going to happen to us? Is there an end to the suffering? Will life ever be somewhat normal again?
 
Yes. That sums it up exactly.

How do you overcome/alter that experience?

I'll let Mark speak for himself on that one (well worth the few minutes to watch). In the meantime, I hope this helps your pain becomes a little more "right-sized."

I know it did mine.

XOXOXO

Day 340: I Don't Even Know How To Respond To That

 A conversation with my husband...

Angel: I’m worried about this show.

Me: Why?

Angel: I’m worried when the kid grows up, they're going to get some crappy child actor.

Me: Really?

Angel:  Yes.  Aren’t you worried about that? I refuse to believe I’m the only one who’s worried about that.

Me: You’re joking, right?

Angel: No. And I’ll bet if you ask other people, they’re worried about it too.

????????????????????????????????????

So, just checking. Anyone else up at midnight worried that the baby on their favorite sitcom is going to be replaced in two-years by Macaulay Culkin?

Altered Today: Belief that I married an alien.

Day 172: What Else Could It Be????

Being a full-time, undiagnosed patient does a lot to a person. It can make you frustrated, cause confusion, fuel anger, create depression. It can also turn you into an avid researcher....one who ends up knowing more about conditions than many doctors themselves.  THIS is the category I am starting to fall into.

As I prepare for this Tuesday's doctor appointment, I am readying myself for two possible outcomes.

1) My lyme co-infection test shows something....and I finally have a diagnosis.
2) My lyme co-infection test is negative and I am back to the drawing board.

If my co-infection's test is positive--an exciting thought--it should put an end to the mystery of what's ailing me.  If not, I am back where I started: the land of Differential Diagnosis.

If you've ever watched the tv drama House, you've seen differential diagnosis in action.  A physician --acting very much like a detective-- looks at your symptoms/problems --testing this drug and that-- until finally, by process of elimination, he/she reaches a conclusion.

In House's world, my D.D. options would look something like something like this....

Trouble is, out of the four remaining diagnoses, only one (Lyme) has a known cause or potential cure. The rest are considered "diseases of unknown origin." Which begs to question: Are Multiple Sclerosis, Chronic Fatigue Syndrome, and Fibromyalgia really the problem or just symptoms of an underlying issue?

Regardless, I have some big decisions to make:
Do I stick with my doctor?
Do I continue with experimental treatment and "see what happens?"
Do I consult with another physician across country?
Do I take matters into my own hands and start a natural protocol?

Although my underlying health may be improving...my symptoms definitely aren't. And with the new pain in my knees, hips, and back making it harder to walk/stand/sit/think, I'm not going to lie -- I am worried the future.

Altered Today: Questioning herx or new symptoms, planning my new big medical move, learning more about what could be ailing me.

Day 130: Thank God for TV

 
If you were in my living room right now, I'd ask for a lot of things:

1) Put the cooked chicken away
2) Make me a lemon balm tea
3) Bring me a glass of ice water
4) Hand me two pumpkin cookies
5) Get me my vitamins and medication
6) Write my blog post

Luckily (please and thank you), my husband handled five of the requests.  The sixth, I didn't ask (at least not out loud).  I'm reserving that favor for when I really, really, really need it.

You'd think the day before I am hopefully going to receive a diagnosis, I'd have lots to talk about. Still, besides bowel movements, chest pain, worries, arm aches, insomnia, and concern, I got nothing (nothing you haven't heard anyway).

Which leaves me with just one word: Californication.

Remember Mulder??  Yes, Mulder from the X-Files.  Well, he has this show on Showtime; also available on Netflix.  Anyway, it's completely lewd, semi-addictive, and very distracting. The perfect way to kill 10 plus hours without getting off the couch.

Can you say guilty pleasure?!?!

Altered Today: Good/Bad TV, new way to avoid thinking about what might happen tomorrow.

Day 122: Life Just Keeps Rolling Along

Fun art by toothpaste for dinner

I completely missed that yesterday was April Fool's Day.  As I flipped through channels, I thought something was weird; props falling over on the Price is Right, stuff blowing up on the Ellen set.  Still, I never put it together; today is joke day--the day people are fooling each other.

That's one of the strange parts of being sick; subtleties are lost on me.  Time is no longer measured by minutes or months. Everything lives in milestones; when pills run out, insurance claims are due, test results come in, or when we need more spinach. 

Days now divide into systematic sections: the morning routine--which consists of swishing, eating breakfast, taking pills and potions, and sorting mail; the afternoon routine--which consists of dry brushing, sauna and/or bath, lunch, taking pills and potions, and researching; the evening run--which consists of dinner, more elixirs, reading, and tv; and the late evening run--which I spend with Angel, sometimes watching a show, reading, sipping hot milk, and always taking more pills.

In between (depending on how I feel), I blog, nap (or struggle to nap), deal with medical issues, go outside, read, and visit on line support groups (are you bored yet??).

Except for the sauna, I rarely go out alone these days--something I miss now that I think about it. I also watch WAY too much tv:  The Talk, The Nate Show, Survivor, American Idol, Celebrity Apprentice, Top Chef (I almost tweeted Holly Robinson Peete yesterday to ask if she knows about the link between Lyme and Autism.  If you see her, can you please pass that along?).

Meanwhile, life just keeps rolling: hubby plays flag football, Meeno (our cat) loves her new spot on my knee, and my dog REALLY enjoys healthy, gluten-free cooking (pumpkin cookies and  artichokes... who knew???).

Just two more episodes of Celebrity Apprentice before my next doctor's appointment (and hopefully a diagnosis).  In real time, that's 9 days or 216 hours.  But hey.... who's counting??? 

Happy April 2nd.

Altered Today: Celebrating foolishness, getting out of the barrel (and hopefully bed).

Day 85: Put A Bird On It

As an artist, I often struggle with how to "create" things.  What belongs there?  Does this go with that?  Is this the right direction?  Sometimes, the choices are so overwhelming, even I don't know where to start.

Well...thank God for Portlandia...a cute sketch comedy show with the solution to my creative worries. 

OMG.  Why didn't I think of that?  (Oh wait, maybe I have).

Altered CD Jacket Journal by Kathy Tagudin

OK, no problem.  At least my bird ideas are distinct amongst all of the other bird ideas.

 

Or....maybe not.

But at least I'm taking the time to be creative and put stuff out there.
This is true. This is arguably true.

So, if you've got something to express, but don't know where to begin...put a bird on it.  I DARE YOU!  If for no other reason than just because you can.

Flippin the Bird T-Shirt by chillin penguin designs

Altered Today: Giving a Flip, Flipping the Bird, More Silly Bird Artwork, Bird on a ?????, Daring YOU to create something.

Day 84: Thank You Tim Robbins, Morgan Freeman, and Carolyn

Have you ever seen The Shawshank Redemption?

If not, you should.  Sprinkled with tiny gems of wisdom, the film has a lot to say about freedom, creating your destiny, and the struggle of life.

"Salvation lies within," Warden Samuel Norton declares in one scene.

"Hope is a good thing, maybe the best of things, and no good thing ever dies," reminds Andy Dufresne in another.

Throughout the movie men, faced with insurmountable obstacles, plan/conspire/pursue/resist the dream of a better life.

They speak of misfortune:

"Bad luck, I guess. It floats around. It's got to land on somebody. It was my turn, that's all. I was in the path of the tornado. I just didn't expect the storm would last as long as it has," reasons Andy.

They speak of settling:

"These walls are funny. First you hate 'em, then you get used to 'em. Enough time passes, you get so you depend on them," justifies Red.

They speak of hope:

"I'm so excited, I can barely sit still or hold a thought in my head. I think it's the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope." says Red.

They speak of struggle:

"You could argue he'd done it to curry favor with the guards. Or, maybe make a few friends among us cons. Me, I think he did it just to feel normal again, if only for a short while," analyzes Red

In the end, the whole sentiment of the movie can be summed up in six words:

"Get busy living, or get busy dying," Andy asserts in memorable moment with Red.

Good Advice, boys. Good Advice.

Altered Today: Taking Advice, Love and Appreciation for my Friend and Movies.

Day 67: It's Not So Terrible

Although I'm originally from Pittsburgh (and a former cheerleader), I'm not a big football fan. I don't own a Terrible Towel, don't know my 1st from 4th downs, and have never quite understood whether I should be screaming because I am excited or because I'm upset. 

I'm not sure how I escaped the obsession.  My husband loves the game. 

Hubby's Facebook Today

My oldest friend regularly flies from California to visit Heinz Field. 

This is Barb no doubt rushing to get home before kickoff.

My sister has Polamalu as her Facebook photo.

 
Her latest Facebook post.

And my parents are Steel Town crazy (just take a look at what they wore to church today).

Dad and Mom

From a distance, it's all sort of cute, but annoying.  While I appreciate the hometown loyalty and go get 'em attitude, I've never understood the competitiveness or the fanaticism.  Although, I must admit,  The Blind Side --the story about Ravens' Michael Oher--did make me appreciate the back story behind the players. LOL.

Anyway, rather than be my normal spoil sport self and retreat to the bedroom with a magazine, today I did something I have never done in 40 years of living:  I watched an entire Superbowl. 

It was a little painful, but doable (thank God for recliners).  And honestly those last 7 minutes were a nail biter.  Am I now a raging fan?  Not really.  But I did wear a Steeler's shirt and even yelled "Go Steelers" a couple of times during the game. 

Who knows?  Next year I may even make nachos.

Altered Today: How I Spent My Superbowl Sunday, Bonding Time with Hubby, Slight Enjoyment of Pigskin.

Day 51: Looking For My Spring

What's Keeping You Up At Night?

If you're creative, you'll probably relate when I say this: I am a night person.  I enjoy evenings, like to stay up late, and find I have the most energy after 10pm.  I am also highly allergic to getting out of bed and eating breakfast before noon.

Lately, however, my body has taken this night stuff to the extreme.  Over the last couple of weeks, my 1:30 bedtime has gradually shifted to 2:30 to 3:30 to 4:30 to 5:30. Now, rather than watch a late movie, hit the hay at 2:00, and sleep until 10, my routine has become watch a movie, watch my husband sleep, toss, turn, stare at the clock, go to the bathroom, toss and turn some more, stare at the clock, doze off at 8 (if I'm lucky), and force myself out of bed before lunch.

Apparently, I'm in good company.  Over the years, lots of famous creatives have struggled with insomnia.  And, according to Facebook, 788 of my fellow insomniacs claim they do their best work at night (not incredibly helpful, but comforting). 

Still, staring at the clock and endlessly being a mud skipper -start at 1:30 (my husband's nickname for me during my nighttime antics), gets me nowhere.  So tonight, instead of fretting in bed, I'm off to an early start with a blog post and some art.  Enjoy your morning.

Altered Today: Lemons to Lemonade, My Routine

Day 49: The Biggest Winner

The story behind this album cover.

Something clicked last night when I watched The Biggest Loser.  As I listened to Rulon Gardner, a current contestant and former Olympian Gold Medalist, I was mesmerized.

"I know I still have the heart of a champion," he said.  "A champion doesn't make an excuse of why he can't do something. You've gotta make it a battle to make yourself better."

Call it the right words at the right time, but those words went straight to my heart.  "I DO have the heart of a champion," I thought.  "I can do this. I can make myself better."

As I watched the rest of the show, my context for being sick started to alter.  "This isn't the end," I thought as I shuffled off to bed. "This is preparing for a comeback."

This morning, the word "comeback" kept ringing in my ears. It was a rough night's sleep, but rather than complain about it (which is typical), I noted the new energy flooding my body.  A new ache, rather than a excuse to stay in bed, became a reason to get up. The new herbs I'm drinking, rather than something to hate, became armor for the battle.

While it's true I've been doing a lot to manage my health, Rulon's right. I can do more.  So today, to honor myself and him, I'm giving it the best that I've got.

Thanks, Rulon.  There's nothing better than a comeback.

Altered Today: Breakfast early, new herbs, attitude